Although lupus often develops in adults, it can occur in children as well. The disease is the same in children as it is in adults, but parents should be alert to lupus’s effects on their child’s emotional health, vision, diet and school activities. Read on…

Lupus has many symptoms, and they can be invisible or very visible. These symptoms can be of great concern to your child, especially those that cause a change in appearance, such as hair loss, a bloated look in the face and neck, skin rashes or lesions (sores), weight gain and easy bruising.

These effects may be caused by lupus or by the medications used to treat the disease. Some of these will diminish or go away entirely when lupus symptoms are controlled by the medication, and also as the dosages of medications are lowered and discontinued. When present, though, these visible symptoms of lupus can be very upsetting to your child.

There may be times when people ask you or your child questions about why such a healthy-looking young person walks with a cane or does

not participate in a school activity or needs a home tutor. Be patient as you help your child learn to cope both with these effects of the disease, and other people’s reactions and attitudes.

Flares and TriggersLupus is also a disease of flares, when the symptoms worsen and the child feels sick, and remission or “quiescence”, when the symptoms improve and the child feels better. Knowing which factors lead to disease flares is an important part of managing lupus. Some common triggers are:

excessive exposure to ultraviolet rays—from the sun or from artificial light

a viral or bacterial infection

stress

exhaustion

It is important that all members of the child’s health care team know about new symptoms. These may indicate a worsening of disease, or a new complication.

As much as possible, encourage your child to let you know about any changes in how she or he feels, physically and mentally. If your child does not feel comfortable communicating to you in person about these symptoms, encourage the keeping of a handwritten or computer diary of symptoms and feelings. Or, ask your child’s favorite nurse or physician’s assistant to make the request.

In addition, keeping your own journal can help you remember questions you want to ask the doctor, instructions or information you are given, medication side effects you observe, or anything else concerning your

child’s health and care. These notes can be very helpful as you and your family learn about lupus and how to adjust and adapt, both now and in the future.

VaccinationsChildren with lupus should not receive any vaccine that contains “live” virus. This is because even a small amount of a virus can cause lupus to become active.

Diet and Nutritional HealthThere is no specific diet for a person with lupus. To improve heart disease risk, reduce inflammation, and lower blood pressure – all of which are very important for people with lupus, including children – try to make sure your child follows the recommended guidelines for healthy eating.

Bone HealthLupus, as well as many of the medications used to treat lupus, can cause loss of bone minerals, such as calcium. When these minerals are not at correct levels, bones may not be able to grow normally, and may not have

normal bone strength. This means that children with lupus are at increased risk for delayed skeletal growth, short stature and fractures later in life. Talk to your child’s doctors about these treatment strategies:

regular bone density screenings using the DXA (known as DEXA)

a calcium and vitamin D supplement

daily weight-bearing and aerobic exercise

Vision HealthOne of the most commonly prescribed medications for lupus is the antimalarial drug hydroxychloroquine (Plaquenil®). Antimalarials can affect the retina, so a complete eye examination by an ophthalmologist should be done prior to the child starting this type of medication, and once or twice a year thereafter. Any problems with vision should be immediately brought to the ophthalmologist’s attention. Also, the dosage should be based upon the child’s ideal body weight for his or her height.

Emotional HealthA child's emotional development, like physical growth, progresses in predictable ways. Understanding the needs of your child at each stage will help you keep the lines of communication open while your family deals with the diagnosis of lupus.

PreschoolPreschool children are very literal – events are directly related to their behavior. If they become ill, they may think: “I’m sick because I was being bad” or “I’ll be really good and I’ll get better.”

Children in this age group don’t need a lot of information about their disease. However, you do not need to hide facts from them. Their questions are simple, so respond with simple answers.

For example, when your child asks, “Why do we go to the doctor

so much?” you could say, “Because the doctor wants to try to make you feel better.”

Some important points to make are:

No one knows what causes lupus, and having lupus is not your fault.

Lupus doesn’t happen because you did something wrong, or misbehaved.

Elementary SchoolChildren in this age group think both concretely and abstractly. Although they are beginning to realize that having lupus is not their fault, it doesn’t relieve their stress. They may show strong emotions in reaction to change, such as anger and/or a preoccupation with and fear of death.

They also still expect their parents to “fix everything.” It is helpful to ask about their concerns, allow them to ask questions and make sure they understand what you have told them.

Some important points to make when talking to your child about lupus are:

Lupus is not contagious: you can’t “catch” lupus from someone or “give” lupus to anyone.

Lupus might make you feel very tired, sore, and/or achy. The doctor will give you medicines, and it’s important to follow the instructions about how and when to take the medicines so you can feel better as soon as possible.

Some things will change, like being able to spend a lot of time in the sun, or participating in some activities.

Be extra careful to wash your hands and stay away from anyone who is sick, so your body doesn’t have to fight off extra germs.

Middle SchoolAt this age, children are capable of making rational decisions and judgments. You can begin to explain the more complicated physical effects of lupus. You can include your child in the process of scheduling upcoming doctors’ appointments and in decisions about treatment.

When you think your child is ready, you can ask the doctors to begin to speak to your child directly, rather than channeling information through you. These strategies will help your child so he or she does not feel powerless against lupus.

Some important points to make to your child are:

It’s OK to ask questions about lupus or the medications, or even about personal issues.

Focus on all of the things you are good at that your disease does not affect.

Don’t give up on your goals and dreams!

School and Extracurricular ActivitiesYour child’s teachers and leaders of organized activities should be made aware of the effects of lupus. The most common issues that may need to be addressed include:

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